My Video Diary

Ian Quill

About this blog...

Hi, I'm a Hepatitis C sufferer and have been for about 25 years or so, unbeknown to me!

The virus became 'active' a few years ago and I was diagnosed sometime after that. Unfortunately my liver was already too badly damaged to undergo traditional treatments.

Since that time my health deteriorated until I had a Full Liver Transplant at St Jimmy's in Leeds, however the HepC still remains!

This is my story about my fight with the virus until I beat it or it beats me... and so far I'm winning!

I hope that what I write here may help others who battle daily with HCV and also for those who face, or have faced the 'highs & lows' of an Organ Transplant.
I have an eye for the unusual, a love of philosophical and political humour and enjoy nothing more than good, old fashioned 'Mickey' taking! I write my blog mainly to amuse me, but also to let people know what HepC is and what it's like to live with.

Please click on the links on this site for the Hep C Trust, Hep C Nomads and others, whom I have relied on for information, help and support - and without whom, I would not be here today.

I hope you enjoy reading my by blog and maybe even find it amusing and enlightening!

Keep well everyone... Ian

The Hepatitis Trust

Helpline: 0845 223 4424

Hep C Nomads

The Social Side Of Support For Those Affected By Hep C - Click here to link Hep C Nomads forum

Current Moon Phase

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Wednesday, 14 November 2012

Hi folks, here is a story from a good freind of mine and I would appreciate it if you could read and click on the links to sign our petition, thank-you.... Ian

This is my story…how I got to be
here…and why I started the campaign at Change.org.

My name is Margaret Dudley, I am 61
years old and live in the great city of San Antonio, Texas. I have a wonderful,
supportive husband and we havethree daughters
and six beautiful grandchildren.

Remember when cosmetic tattoos were
first becoming popular? Permanent lip liner and eyebrows were all the rage.
Many of my girlfriends and I had these procedures done and the results were
great. It was nothing extreme… just a little subtle enhancement. We are ‘baby
boomers’ and quite honestly not ready to look like our mothers. I looked and
felt great…for a while.

I had not felt well in the years
following my cosmetic “tattooing” procedure, and my doctors attributed my many
symptoms to just getting older and said it was likely the onset of menopause.

I was really exhausted and fatigued all
the time, and was often nauseated and bloated. I began to experience other
stomach problems as well as crippling back pain. The worst of it was an awful
four-year long ordeal with skin problems on the palms of both hands… severe
cracks, bleeding, and extreme itching. I became very depressed as doctors
continued to misdiagnose my symptoms for eleven years.

One day, a proverbial light came on and
I told my doctor about a lady who had this procedure done at the same place
that my friends and I did and she was diagnosed with the Hepatitis C virus (HCV)
after she donated blood(More).My
doctor immediately ran the test and the very next day (September 9th, 2011) I
received the devastating news that I, too, was infected with this disease.

I immediately began researching and
learning everything I could about this disease, trying to learn what was in
store for me, what treatment was available, and most importantly, if there was
a CURE!

Then I found the best news…

I learned there was indeed a cure for
this awful virus that was now growing rampantly in my body. This cure consisted
of two drugs, GS-7977 (now called sofosbuvir) and daclatasvir. When combined in
Phase II trials this combination cured 100% of the most prevalent type of
Hepatitis C.

And this treatment had minimal or no
side effects!

The two drugs with this amazing success
rate are owned by Gilead Sciences and Bristol-Myers Squibb. I was actually
scheduled to be in this very trial which was being conducted by my hepatologist
and leading HCV researcher, Dr. Eric Lawitz who heads Alamo Medical Research
Center here in San Antonio; but due to a delay in my liver biopsy I missed the
trial by mere weeks. Dr. Lawitz assured me once the results were released in
April 2012 the two drug companies who owned these two successful and miraculous
drugs would enter immediately into Phase III trials and this life-saving combo
would soon be available for me and the countless millions of others who are
suffering and dying with this disease.

There were many news articles on Fox News and other media outlets discussing the
progress and amazing success of these trials. My family and I were so confident
that these Phase III trials would soon be underway. My youngest daughter even
postponed her wedding by six months knowing by then I would be cured. (Kim was
married this past September 29th)

Then all of a sudden it was abruptly
announced by Gilead Sciences that there would be no Phase III trials, with no
conceivable or plausible explanation as to why! This felt even more devastating
than my initial diagnosis, if that is possible!

Seeing that my life and millions of
others now hang in the balance, I launched a petition at Change.orgurging
Gilead Sciences to make this life-saving medication available for the millions
of HCV sufferers as well as for myself. Although it feels much like a David vs.
Goliath battle trying to get Gilead Sciences to reconsider their position I
have now become an advocate for this cause and have formed a grassroots effort,
HCV Coalition for The Cure. I want to bring the nation’s attention to this dire
situation.

I have heard thousands of heartbreaking
stories from people who need this cure and they need it NOW! I am asking you to
sign this petition because everyone is affected
by Hepatitis C, either fighting it, or knows a family or friend who is.

“Individually, we are one drop.
Together, we are an ocean.” -Ryunosuke Satoro

Your signature could be the drop that
creates this ocean! And it may be the very one needed to get this cure for
millions.

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What Is Hepatitis C?

Hepatitis C Information:

Hepatits C is a blood-borne viral disease which can cause liver inflamation, fibrosis, cirrhosis and liver cancer. The Hepatitis C virus (HCV) is spread by blood-to-blood contact with infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide. It is the leading cause of liver Transplant...

Hepatitis C is an inflamation of the liver caused by infection with the Hepatitis C virus is one of the five known hepatitis viruses: A, B, C, D & E. Hepatitis C was previousley known as non-A non-B hepatitis prior to isolation of the virus in 1989.

Symptoms of Acute Hepatitis C:

Acute Hepatitis C refers to first 6 months after infection with HCV. Remarkably, 60% - 70% of people develop no symptoms during the acute phase. In the minority of patients who experience acute phase symptoms, thet are generally mild and non-specific, and rarely lead to specific diagnoses of Hepatitis C. Symptoms of acute hepatitis C include decreased appetite, fatigue, abdominal pain, jaundice, itching and flu-like symptoms.

Symptoms of Chronic Hepatitis C:

Chronic Hepatitis C is defined as infection with the Hepatitis C virus persisting for more than six months. The course of chronic hepatitis C varies considerably from one person to another. Virtually all people infected with HCV have evidence of inflamation on liver biopsy however, the rate of progression of liver scarring (fibrosis) shows significant inter-individual variability.